cbdr and mycbdr : advancing hemophilia nursing practice in
TRANSCRIPT
WFH
2018
Poster presented at:
CBDR and MyCBDR: Advancing Hemophilia Nursing Practice in CanadaKay Decker, RN* and Claude Meilleur, RN†
*McMaster Children’s Hospital, Hamilton Health Sciences, Hamilton, ON and †CHU Sainte-Justine, Montreal, QC
In Canada, Hemophilia Treatment Centers (HTCs) provide care andservices to patients with bleeding disorders. The advancement ofroutine prophylaxis regimens allows patients to experience lessbleeds and fewer unscheduled visits to HTCs.1 To adapt to thesechanges in hemophilia management, comprehensive care teamsmust implement new strategies to accurately monitor bleedingepisodes, factor usage and adherence to treatment regimens.1-4 Thisrequires detailed record keeping and adequate patient education tohelp care teams manage patients and individualize factorreplacement treatment regimens.4-6 In 2015, Canada launched theCanadian Bleeding Disorder Registry (CBDR), along with MyCBDR, aninternet-based infusion tracking application that allows synchronouscommunication with CBDR at HTCs across Canada.7 Here, we presenttwo case studies that illustrate how CBDR/MyCBDR have improvedthe efficiency of our practice and can foster a rapid sharing ofinformation between patients and their care team.
Introduction
Technological advances have introduced several electronic-basedmethods for hemophilia tracking. In 2015, CBDR/MyCBDR waslaunched in Canada to provide the opportunity to improve patientadherence, education and engagement. These platforms have thecapability to assemble all patient data into one easily accessiblelocation and allow care teams to receive real-time updates ofinformation inputted by patients via computer or mobile device(Figure 1).7
Patient education is a fundamental component for successfulhemophilia self-management. Lack of hemophilia knowledge resultsin poor adherence and self-management.2,8 During one-on-one visitswith patients, nurses can use CBDR to help patients betterunderstand their hemophilia and how they can be active in itsmanagement. In addition, MyCBDR encourages users to take controlof their hemophilia management, and can be reinforced by careteams with one-on-one patient education.
Advancing Hemophilia Tracking
& Patient Education
Figure 1. Integration of CBDR and MyCBDR.7 These platforms allow efficient sharing of information between patients/caregivers and their care team. In addition, information on the CBDR database provides anonymous collection of patient data to support hemophilia research.
Database
Patient/Caregiver
HTC
Hemophilia Research
Case Studies
Health Care Team:• Performed medical assessment• Physiotherapist evaluation• Established trust by reviewing all treatment
options to select an approach best suited for Oscar• Evaluated inhibitor test = Positive (low titre)• Discussed value of using MyCBDR to monitor
bleeds, inhibitor levels and treatments to optimize therapy
Case Overview: • 04/1999: Severe Hemophilia A• 05/1999: Inhibitor results = 12 BU
Nurse:• Alert feature allowed nurse to receive notification of
hematoma via email (photo uploaded to MyCBDR)• Reviewed data inputted by Oscar into MyCBDR• Scheduled appointment with Oscar to discuss changing to
short-term treatment regimen• Educated Oscar on hemophilia management, his increased
risk of intracranial bleeding, importance of inhibitor testing and role for prophylaxis
• Performed inhibitor testing
• 2008/2013: Intracranial bleed • 06/2015: Enrolled in MyCBDR
• 06/2016: Inhibitor results = Negative• 06/2017: Large hematoma in left thigh
538
6
1
1
Total
Planned
Treatment
Nov15
Dec15
Jan16
Feb16
Mar16
Apr16
May16
Jun16
Jul16
Aug16
Sep16
Oct16
Nov16
Dec16
Jan17
Feb17
Mar17
Apr17
May17
Jun17
Jul17
Aug17
Sep17
Oct17
Nov17
Dec17
Jan17
Feb17
18 19Age
Product Usage
Helixate FS
Xyntha
FEIBA NF
Key Changes
Inhibitor Testing
New Treatment Plan
Weight Change
Interaction History
Coagulation
Pharmacokinetic Study
Hemophilia Clinic Visit
MyCBDR Treatment
Case 1: Oscar* | Age 20
Health Care team:• Encouraged David to switch from a paper diary to
MyCBDR to better evaluate bleed patterns/infusion regimes (dose/time/frequency)
• A medical assessment was performed by the physician, nurse and physiotherapist
• Performed inhibitor testing• PK study was performed (WAPPS-Hemo, McMaster
University) to evaluate FVIII half-life and optimize David’s treatment schedule
• Data from CBDR/MyCBDR and WAPPS-Hemo were evaluated
– WAPPS-Hemo confirmed a short half-life of 6 hours
*Some case information has been altered to protect patient identity. PK = pharmacokinetic.
• Using visuals from CBDR/MyCBDR and WAPPS-Hemo, health care team educated David on his bleeding patterns and explained rationale for his individualized treatment interval
• Provided an individualized treatment recommendation– Prophylaxis was adjusted to every 36 hours
Case Overview: • Severe Hemophilia A• Past history of inhibitors
• Using paper diary to record treatments
• Breakthrough bleeds despite prophylaxis every 48 hours• Prefers not to treat daily
50 10 15 20 25 30 35 40 450.0
0.5
1.0
1.5
2.0
Pla
sma
Fact
or
Co
nce
ntr
atio
n (
IU/m
L)
Time (hr)
0.02 0.010.95
Estimate
Parameter Conservative Balanced Optimistic
Time to 0.05 IU/ml (hr) 26.00 28.25 30.50
Time to 0.02 IU/ml (hr) 35.50 38.50 41.75
Time to 0.01 IU/ml (hr) 45.00 49.00 53.00
Half-life 6.00 6.50 7.00
Pharmacokinetic Estimate
Convert days to hours Plasma Factor Concentration Estimate (IU/mL)
Time (Days) Conservative Balanced Optimistic
1 0.000 0.068 0.000
2 0.000 0.005 0.000
2000
2500
1500
1000
500
001 02 03 04 05 06 07 08 09 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31
MyCBDR Product Treatment Over Time
Routine Prophylaxis Bleed
IU
Measured
Estimated
Case 2: David* | Age 41
1. Paper diaries may be the most appropriate choice for some patients, however MyCBDR provides care teams/patients with more complete information and easy to interpret graphs
2. By reviewing data from platforms such as CBDR/MyCBDR and WAPPS-Hemo, care teams can:– Obtain a more comprehensive overview of patients’
profile, make more informed treatment decisions and individualize treatment regimens
– Use patients’ own data to educate and empower them to better understand their bleed patterns and be active in the management of their hemophilia care
Case Key Teaching Points
1. MyCBDR supports efficient information sharing between patient and HTC – Alert feature allowed care team to intervene quickly to
adjust treatment plan– Although care team proactively contacted Oscar, patients
should always call their HTC if a major bleed occurs
2. Established line of trust and transparency between patient and HTC is essential – Important for care team to support patient’s treatment
choice
3. CBDR/MyCBDR allows HTC to assess treatment effectiveness and adjust as needed in real-time – graphs of bleed occurrences in context of inhibitor levels/treatments can help patients understand the rationale behind recommended treatment changes
Case 2: David
Summary
Case 1: Oscar 1. Build a trusting relationship with the patient:► Allows patients to be transparent with care teams and confidently
accept treatment recommendations
2. Remain nonjudgmental:► Care teams and caregivers need to remain open and
nonjudgmental – failure to do so could encourage dishonesty among patients
3. Start patient education early:► Beginning patient education in adolescents is fundamental in
promoting treatment adherence and hemophilia self-management
4. Use visuals:► During one-on-one visits, CBDR/MyCBDR provides visual tools to
help patients understand their bleed patterns and treatment efficacy
5. Individualize treatment regimens:► Review possible treatment options and engage patients in
choosing a regimen that is realistic for them to follow
References:1. Sholapur N et al. Haemophilia. 2010;19:289-295; 2. Peyvandi F et al. The Lancet. 2016;388:187-97; 3. Khair K. Orthopaedic Nursing. 2010;29:193-200; 4. Walker I et al. Haemophilia. 2004;10:698-704; 5. Srivastava A et al. Haemophilia. 2013;19:1-47; 6. Canadian Bleeding Disorders Registry – CBDR. Available from: www.hemophilia.ca; 7. Carcao and Iorio. Semin Thromb Hemost. 2015;41:864-71; 8. Saxena K. J Blood Med. 2013;4:49-56.
Acknowledgements:
Editorial and publication support provided by Shire Canada.
T-P-19
T-P-14Kay Decker DOI: 10.3252/pso.eu.WFH2018.2018
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